1. PROMISE Performance Reporting and Outcomes Measurement to Improve the Standard of care at End-of-life The PROMISE team HPC meeting, St Louis May 12, 2009

2. Objectives:  To introduce the PROMISE center  To explain PROMISE: »Methods »Reports  To describe where PROMISE is going; and  To identify ways in which we’ll need your help

3. PROMISE goals:  To identify and reduce unwanted variation in the quality of end-of-life care for veterans.  To define and disseminate processes of care that contribute to improved outcomes for veterans near the end of life and their families.

4. What is PROMISE?  The quality measurement center for the CELC Initiative  Based at the Philadelphia VAMC Center for Health Equity Research and Promotion  Funded through the CELC to provide: »A voice for veterans/families »Actionable data that can guide facility- VISN- and national-level planning and strategy.

5. What does PROMISE deliver?  Data for facilities about the quality of end-of- life care they provide »Timely feedback »Understandable reports »Meaningful benchmarks  Practical guidance for HPC programs  Useful evaluations for CELC Initiative leadership

6. Framework for PROMISE data: Domains of care (from NCP guidelines)  Physical aspects of care  Social aspects of care  Spiritual, religious, and existential aspects of care  Cultural aspects of care  Care of the imminently dying patient  Psychological and psychiatric aspects of care (including bereavement)

7. Framework for PROMISE data: Aspects of care  Processes of care (from chart reviews)  Outcomes (Families’ perceptions of care)  Currently (Q1 FY09) 43 facilities: »~800 interviews/quarter »~1600 chart reviews/quarter

8. Processes of care: Chart review  Sample: »Inpatient deaths »Excluding “unexpected” deaths (e.g. ER, suicide, homicide, OR for outpatient procedure)  Deaths identified using VISN data (multiple overlapping samples)  Remote chart reviews via Global CPRS

9. Processes of care: (examples)  Pain assessment within 24 hours of last admission  Palliative care consultation note  Documentation of a surrogate or that a surrogate could not be found  Chaplain contact with veteran/family  Social work note  Documentation of a bereavement contact

10. Processes of care: Documentation of a surrogate decision-maker

11. Outcomes of care: The Bereaved Family Survey  BFS: OMB-approved survey derived from the Family Assessment of Treatment at End-of-life (FATE)  14-item telephone survey administered to the veteran’s NOK 6-10 weeks after death  Procedure: »Predefined algorithm for contacts (NOK first choice) »Initial letter with opt-out provision »Telephone contact »Opportunity for family members to refer to alternate

12. Outcomes of care: 12 multiple-choice BFS items  Pain management (1)  Communication (Providers gave enough information in an understandable way and took time to listen) (3)  Veteran didn’t receive unwanted treatment (1)  Providers were kind, caring, and respectful (1)  Family was told what to expect in the veteran’s last hours of life (1)  Veteran’s personal care needs were met (1)  Spiritual support, emotional support (pre/post) (3)  Enough help with funeral arrangements (1)

13. Outcomes of care: BFS scoring  All items are either dichotomous or frequency-based »Did you receive as much help as you needed with… »How often did the health care providers who took care of [veteran]…  Responses dichotomized (Best possible response vs. all others).  BFS and item scores reflect a proportion of the time that the veteran/family received the best possible care.

14. BFS scores: 43 facilities

15. Families’ perceptions of bereavement support: 43 facilities

16. Quarterly VISN-level reports  Categories match NCP domains  Reports broken down by facility (Process and outcome measures)  Compared to sample benchmark (pooled mean of top facilities)  Hypertext links to: »Best Practices on PROMISE website »SharePoint tools (Luhrs)

17. Additional data…responses to 2 open-ended questions  “The hospice unit was the best part of the care that [veteran] got in the whole 14 years that he was going to the VA.”  “We really depended on the palliative team— they were wonderful.”  “Everyone was very helpful, but especially [NP on PCCT]. She was always there, always available. We wouldn’t have made it without her.”

18. Additional data…referrals for unmet needs  Unmet needs identified in interviews: »Bereavement »Questions about care »Questions about benefits  Referred to VISN coordinator and/or facility patient advocate (with family permission).  Gives us: »An opportunity to meet needs and to leave families with a good impression of the VA »Valuable data about needs for improvement

19. Can you give us even more data?

20. Additional data…  Aggregate (broken down) data available to each VISN  “Raw” data available on request  Menu-driven custom reports online (at PROMISE website) »“Mean BFS score in our ICU, with and without palliative care” »“Mean bereavement score in our VISN, with and without a bereavement contact”

21. Using the PROMISE report: 6 rules 1.Don’t panic 2.Focus! (Look at individual items) 3.Ask: Do you have enough data? (Two quarters’ worth) 4.Use common sense (does this score make sense?) 5.Select one item to improve that has: 1.A low score 2.An obvious action plan 6.Be skeptical about changes

22. Interpreting changes: What happened in these facilities?  A facility improves its BFS score from 45 to 60 in 3 months  Answer: Nothing  A facility improves its bereavement score from 49 to 65 in 3 months  Answer: A social worker dedicated to bereavement calls; educational materials for family; a condolence letter for all deaths.  Lesson: Be critical about scores and changes

23. Closing the loop: Bringing the veteran’s and family’s voice back to the bedside

24. Help us close the loop (1-2) 1. “Success stories” solicited from field »Structured description via web-based form (Through PROMISE website) »Submit descriptions of: Good scores Improvements How you’re using PROMISE data 2. “QI Registry” tracking single-facility interventions »Structured description of goal, intervention, and expected outcome submitted via web-based form (Through PROMISE website)

25. Help us close the loop (3) 3. “QI Collaboratives” that track multiple-facility interventions »Best Practices reviewed/selected by advisory panels (Carol Luhrs and Therese Cortez) »Designated leader »Organized schedule »Technical assistance »Measurement/analysis by PROMISE »Tailored feedback

26. PROMISE Implementation Recommendations (PCLC/PROMISE) Dissemination (PROMISE newsletter, etc) Implementation (Sharepoint, technical assistance, etc) QI registry QI Collaboratives Evaluation: BFS Chart review Guidelines/ Expert opinion

27. PROMISE goals:  To identify and reduce unwanted variation in the quality of end-of-life care for veterans.  To define and disseminate processes of care (“Best Practices”) that contribute to improved outcomes for veterans near the end of life and their families.

28. Progress and next steps  Rollout: »7 VISNs on board FY08 »Goal: 12 in FY09; 21 in FY10  Dissemination: PROMISE website coming online  Measurement: »Refine process measures »Implement Success Stories; QI registry; Collaboratives

29. PROMISE website: www.cherp.research.va.gov/PROMISE  (Non-VA site: www.caringforveterans.org)www.caringforveterans.org  Find out more about PROMISE  Register a QI initiative  Brag about a success story  Join a QI collaborative  Learn about best practices (coming soon)